CCSVI, cause or symptom?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: CCSVI syndrome has documented symptoms

Postby dania » Wed Jan 04, 2012 1:35 pm

EJC wrote:
dania wrote:If "Big "Pharma" had not be waylaid-ed off the correct path by "doctors" believing our problem is autoimmune then maybe they would of looked for medications to help in the vascular area, such as better vasodilators, meds to promote epithelium health, something to stop restenosis and/or scarring in the treated veins, replacement valves and veins for our defective ones. And something to restore the destoyed myelin. The possibilities are endless.


All of this would follow once they just work out why people get these symptoms to start with. All of the above is addressing symptoms, address the probem and it's not long before there are no symptoms to deal with.

Maybe we are born with the problem for whatever reason. At any rate it will be a long time before they find exactly what starts this problem. So at the moment angio seems to be the only fix but that can come with a new set of problems, I had angio done twice and tried 3 more times with 2 different doctors. Neither one could get past my blockages to do angioplasty. They said all 3 veins are now 100% blocked with scarring. And I am not the only one with this problem after having had angio. Angio can create scarring and/or intimal hyperplasia. I am not even a candidate for a vein transplant as I do not have 2 cm of good vein left in which to attach the transplanted vein. So,in my opinion, for the time being, is not just a matter of addressing symptoms but addressing the damage angio could do. So if a pharmaceutical company came up with a solution to this, many would be very grateful. Now I have zero blood flow in all 3 veins. Getting worse by the day.
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Re: CCSVI syndrome has documented symptoms

Postby EJC » Wed Jan 04, 2012 1:57 pm

dania wrote:Maybe we are born with the problem for whatever reason. At any rate it will be a long time before they find exactly what starts this problem. So at the moment angio seems to be the only fix but that can come with a new set of problems, I had angio done twice and tried 3 more times with 2 different doctors. Neither one could get past my blockages to do angioplasty. They said all 3 veins are now 100% blocked with scarring. And I am not the only one with this problem after having had angio. Angio can create scarring and/or intimal hyperplasia. I am not even a candidate for a vein transplant as I do not have 2 cm of good vein left in which to attach the transplanted vein. So,in my opinion, for the time being, is not just a matter of addressing symptoms but addressing the damage angio could do. So if a pharmaceutical company came up with a solution to this, many would be very grateful. Now I have zero blood flow in all 3 veins. Getting worse by the day.


Well if after three attempts logic would dictate the problem may in fact be elsewhere. It's the conclusion we came to. We chose not to repeat the procedure for fear of the damage you highlight.

After the first transient CCSVI procedure which in Emma's case did produce results which gradually faded, it pointed to a physical problem. We've now decided to go the route we have, which some my find somewhat eccentric or off the wall. Time will tell if it is.
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Re: CCSVI syndrome has documented symptoms

Postby Cece » Wed Jan 04, 2012 5:24 pm

dania wrote:So,in my opinion, for the time being, is not just a matter of addressing symptoms but addressing the damage angio could do.

This is part of why I am as interested as I am in the different IR techniques, in the hopes of a gold standard emerging that minimizes damage. Dr. Sclafani's SIR abstract shows a reduction in complications once he began using IVUS on every patient.
EJC wrote:All of the above is addressing symptoms, address the probem and it's not long before there are no symptoms to deal with.

But what about the reality of brain damage? White matter lesions. Gray matter lesions. Atrophy of the brain. Regardless of the cause of the damage, the damage is there. Stopping further damage is no guarantee of undoing the damage that is already there.
Amir wrote:No wonder her drug treatment was an utter failure.

Drug treatment is intended, at best, to slow the rate at which MS steals parts of us away. It is why it is difficult to know if drug treatment is a success or a fail in any one individual. Who is to say what shape we'd be in if we weren't on the DMD? By the standard of, "It cured me," all MS drug treatment is a failure, since that is not what the drugs purport to do. But there is research supporting the drugs. There is research supporting CCSVI. There is not research supporting jaw/cranial asymetry correction.

There is also not research supporting some of the supplements I take, but I take them anyway. It is reasonable to try all that can be tried, when you're up against MS, and it is reasonable to shout to the heavens if you find something that works for you.

Have I mentioned lately that CCSVI treatment worked for me? I've taken on a few new responsibilities this week that I could not have done a year ago, or even six months ago. There has been a stability to my health, where I can say that how I am doing today is how I'll be doing tomorrow, or next week too. :)
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Re: CCSVI, cause or symptom?

Postby tuftyone » Thu Jan 05, 2012 3:07 am

Asher wrote:How much more rubbish can the honerable members of this forum continue to tolerate?

Members of the CCSVI community did not spare George Goss (who underwent HSCT, a clinically proven MS procedure with curative results) nor criticism nor insult for claiming to be cured. I wonder whether Dr. Amir's bold statement will meet the same kind of critical response.


Asher, responses like this are extremeley unhelpful and inflammatory. I have to ask if you have ever read anything written by Amir, ever spoken to him or any of his patients? If you had, you'd understand what an intelligent, caring and inspiring man he is. I've been following treatment with him to correct my atlas and jaw for nearly three years now. There's clearly still a lot more work to do, but I can report no more brain fog, MS Hug, numb limbs, headaches etc. and I am more agile and can even "skip" up a step or two. There are many snake oil merchants out there and I can say that Amir is not one of them and can speak from personal experience when I say that there is no financial motive to his actions, but more one of a devotion to learn about and understand this "disease" in order to help people with what he has discovered. What we need in this world are pioneering, open thinkers like Amir, and forums like this exist to promote discussion so we may learn from each other.

EJC,
I was really good to meet you the other day and I'm glad you are already seeing improvement. I think you'd agree with what i've said above.
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Re: CCSVI syndrome has documented symptoms

Postby EJC » Thu Jan 05, 2012 3:11 am

Cece wrote:But what about the reality of brain damage? White matter lesions. Gray matter lesions. Atrophy of the brain. Regardless of the cause of the damage, the damage is there. Stopping further damage is no guarantee of undoing the damage that is already there.


The things is, what is a drug going to do to help this anyhow? In decades to come stem cell research may well be the answer but drugs certainly won't repair the problems highlighted.

However, the body is an incredible machine, what we don't know is how or to what extent it would heal itself if the cause of the problem were removed.

Lesions on the brain in particular often bear no relation in location to any of the physical problems associated with MS, our brains have an incredible ability to simply stop using the damaged (lesion) area and replace it's use elsewhere,

Of course there is no guarantee in any of this except one. There will never be a day where a "wonder drug" is found that stops it all or cure's the problem, becasue to a degree these are all based on interupting, interacting or blocking the immune system in some way shape or form. But MS isn't an autoimmune problem, that in itself is another symptom.
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Re: CCSVI, cause or symptom?

Postby EJC » Thu Jan 05, 2012 3:18 am

tuftyone wrote:
Asher wrote:How much more rubbish can the honerable members of this forum continue to tolerate?

Members of the CCSVI community did not spare George Goss (who underwent HSCT, a clinically proven MS procedure with curative results) nor criticism nor insult for claiming to be cured. I wonder whether Dr. Amir's bold statement will meet the same kind of critical response.


Asher, responses like this are extremeley unhelpful and inflammatory. I have to ask if you have ever read anything written by Amir, ever spoken to him or any of his patients? If you had, you'd understand what an intelligent, caring and inspiring man he is. I've been following treatment with him to correct my atlas and jaw for nearly three years now. There's clearly still a lot more work to do, but I can report no more brain fog, MS Hug, numb limbs, headaches etc. and I am more agile and can even "skip" up a step or two. There are many snake oil merchants out there and I can say that Amir is not one of them and can speak from personal experience when I say that there is no financial motive to his actions, but more one of a devotion to learn about and understand this "disease" in order to help people with what he has discovered. What we need in this world are pioneering, open thinkers like Amir, and forums like this exist to promote discussion so we may learn from each other.

EJC,
I was really good to meet you the other day and I'm glad you are already seeing improvement. I think you'd agree with what i've said above.


Glad you could join us, it was good to meet you on Tuesday.

I couldn't agree more with what you've written above. When we first met Amir his treatments, ideas and theories were so left field it made you stop and re think everything you've previously taken for granted about MS. Of course, with ground breaking theory comes a certain amount of skepticism and I'm a healthy skeptic with the rest of them.

The more of Amir's patients we meet the more we know we're heading in the right direction.
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Re: CCSVI syndrome has documented symptoms

Postby CureOrBust » Thu Jan 05, 2012 3:30 am

EJC wrote:The things is, what is a drug going to do to help this anyhow? In decades to come stem cell research may well be the answer but drugs certainly won't repair the problems highlighted.
Read about Anti-Lingo-1. It appears to help with re-mylination and the Axons as well. Its currently being tested for MS. :smile:
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Re: CCSVI syndrome has documented symptoms

Postby EJC » Thu Jan 05, 2012 3:49 am

CureOrBust wrote:
EJC wrote:The things is, what is a drug going to do to help this anyhow? In decades to come stem cell research may well be the answer but drugs certainly won't repair the problems highlighted.
Read about Anti-Lingo-1. It appears to help with re-mylination and the Axons as well. Its currently being tested for MS. :smile:


Interesting:-

http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1845

Here's another article about remyelination

http://discoverysedge.mayo.edu/de07-4-n ... cchinetti/

What I find interesting in all these studies is that after 160 years the assumption is still that MS is an autoimmune disease. No one seems to even question this.

If all this energy being put into treating symptoms was directed more towards causality it would be far more fruitful.
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Re: CCSVI, cause or symptom?

Postby CureOrBust » Thu Jan 05, 2012 5:00 am

I do not understand your point is in regard to Anti-Lingo-1. It has nothing to do with the auto immune theory :? Only the fact of neurological damage being repaired and / or minimised, whatever the cause.
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Re: CCSVI, cause or symptom?

Postby EJC » Thu Jan 05, 2012 6:13 am

CureOrBust wrote:I do not understand your point is in regard to Anti-Lingo-1. It has nothing to do with the auto immune theory :? Only the fact of neurological damage being repaired and / or minimised, whatever the cause.


You did read the article in the link above my comment?
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MS is multifactorial or three dimensions

Postby MarkW » Thu Jan 05, 2012 12:25 pm

Hello Amir,
You say that MS is a physical disease with just three dimensions but have not listed the dimensions clearly. I have studied plenty of evidence that says MS is multi-factorial (more than three factors and not the same factors in every person with MS). This is our diasgreement in summary.
I do not resort to vebal insults and study the publicly available data sources. I do not find overwhelming evidence for physical problems being the prime cause of MS but have concluded that treating physical symptoms when present is a rational approach. I support treating symptoms with safe methods or effective drugs, whereas you appear to say that only physical treatments are needed for resolution of MS.
TiMS readers can reach their own conclusions and if they have sufficient money adopt treatments they desire.
MarkW
PS To TiMs readers - I have no presonal or financial interest in Copaxone. I used it as an example because Emma was using it, that's all.

Amir wrote: The physical nature of CCSVIS findings has done more for MS patients than any drug ever did in a relatively short space of time.
MarkW replies:
I advocate using de-stenosis and immune systems drugs not just one of them. With this multifactorial disease we should use all the tools at our disposal.

Amir wrote: Not multifactorial. Three dimensional and needs three dimensional physical correction with nominal palliative medication for pain.
Amir wrote: I managed to heal my first MS patient through physical treatment more than 12 years ago. I feel that MS is a Physical illness. In fact I am pretty sure of it.
MarkW replies:
If your physical treatment cured MS in all patients that would be great, but I have not seen evidence of this. I agree that if pwMS have physical symptoms they should be treated. Your leap to say that MS is a Physical illness rather than a multifactorial one is not supported by evidence.


Amir wrote:Your audacity is beyond redemption. When did you ask for evidence? Do you ever read anything properly? If my treatment cured just one patient I have done better than millions who have taken your Copaxone which you admit is not geared to cure, other times you admit the drugs are only checked for patient safety not whether they do anything or not.
Your advocacy of something that you admit is at best experimental is the height of absurdity.
MarkW comments: I advocate trying drugs for pwMS. I have seen remarkable results even with interferon. I do not discount drugs before they are tried with a particular patient. PwMS respond differently to drugs and there is no proper explanation as why this happens.


Amir wrote: Absurd! I value your intransigence though. Promotes a healthy discussion!
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: MS is multifactorial or three dimensions

Postby Amir » Thu Jan 05, 2012 2:26 pm

MarkW wrote:Hello Amir,
You say that MS is a physical disease with just three dimensions but have not listed the dimensions clearly. I have studied plenty of evidence that says MS is multi-factorial (more than three factors and not the same factors in every person with MS). This is our diasgreement in summary.
I do not resort to vebal insults and study the publicly available data sources. I do not find overwhelming evidence for physical problems being the prime cause of MS but have concluded that treating physical symptoms when present is a rational approach. I support treating symptoms with safe methods or effective drugs, whereas you appear to say that only physical treatments are needed for resolution of MS.
TiMS readers can reach their own conclusions and if they have sufficient money adopt treatments they desire.
MarkW
PS To TiMs readers - I have no presonal or financial interest in Copaxone. I used it as an example because Emma was using it, that's all.

Hello Mark

Thank you for clearing that. I thought you were a senior partner in some conglomerate and here I was possibly jeopardising you banking billions each year! They stopped talking millions years ago.

Let us take a different scenario. Go back a few years when there was nothing known about CCSVI. Everybody was discussing drugs, auto immune disease and more drugs and more auto immune disease. Dr Zamboni arrived and after a bit of reluctance there is now a three way discussion about drugs, auto immune disease and CCSVI.

While all of you have been discussing these subjects I have been burning the midnight oil, on my own, away from the limelight, working on a very different concept of illness.

I came across MS by chance and if you have read Mary Maguire's article it describes the whole story quite accurately.

When I first saw Mary I hardly knew anything about MS. I asked her to come in and I shall examine her according to the picture I have developed about illness patterns. (I am so glad I had read nothing about MS because I might have been too scared to accept her knowing she has this dreadful auto immune disease and my ideas shall have no impact on this illness. She is terminal.) When she arrived I examined her and concluded that her illness fitted in with my criteria of illness patterns and perhaps I could help her. To make a long story short she describes her recovery better than I could.

I only saw her again last month and she is as fit as ever with no sign of illness whatsoever. We have not discussed MS for years. It has been history for a long time.

EJC exposed me to this thread. At first I came in reluctantly but because I now have so many MS patients I thought I must get deeper into it and have been reading all the threads, learning more than ever before from the MSers. I do not take any ones misfortune lightly and have a deep solidarity and an earnest desire to help. I do not own a pharmaceutical in need of multi billions annually and do not wish to extend anyones illness a day longer. My assertions and statements do not come lightly and have been thought over and refined over very many years of practical experience.

I am firmly on the scene now. My patients are providing a live commentary. My neck is on the block. I do not want you to agree with me. The proof will be when EJC recovers. Others, who will start writing here shortly and speak of their experiences. I could hang anytime!

So if you have read the testimonials and the articles I have written you have a new dimension which has arrived on the scene. It is never going to go away. Too many people are benefitting from it just as people are benefitting from CCSVI. Both CCSVI and my Cranio Dental and Skeletal Symmetry concepts are going to become a solid fundamental and integral part of patient care.

There is no patient who has been labelled with 'MS' is symmetrical in all dimensions. This is another bold statement I make. Please write in if anyone of you disagrees with me. I shall give you a free consultation.

For the sake of brevity I said three dimensions. These are CCSVI, Atlas correction and finally Cranio-dental and Skeletal Symmetry. I excluded the drugs but like I said you can include them as the fourth (or the first) dimension.

I quote a couple of small paragraphs from a book I am writing:

"Symmetry of the cranio dental complex and the skeleton appears to be a key to the proper functioning of our brain, the intake of nutrients, the intake of oxygen and the proper functioning of all the organs of the body. Optimal function needs absolute symmetry...........

The work of Roger Sperry who won the Nobel Prize for brain research in 1981 states that: "More than 90% of the energy output of the brain is used in relating to the physical body in its gravitational field. The more mechanically distorted a person is the less energy available for thinking, metabolism and healing.............."

To learn more you will have to await the book.

I appreciate your input and we shall just have to agree to disagree.
Last edited by Amir on Thu Jan 05, 2012 3:15 pm, edited 2 times in total.
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Re: CCSVI syndrome has documented symptoms

Postby Amir » Thu Jan 05, 2012 2:59 pm

CureOrBust wrote:
EJC wrote:The things is, what is a drug going to do to help this anyhow? In decades to come stem cell research may well be the answer but drugs certainly won't repair the problems highlighted.
Read about Anti-Lingo-1. It appears to help with re-mylination and the Axons as well. Its currently being tested for MS. :smile:


The gospel
MS is thought to be an autoimmune disease in which the immune system attacks the protective covering of axons, called the myelin sheath. The immune system is organized to defend against infections, viruses and other pathogens. In autoimmune diseases, the system misidentifies healthy tissue as foreign and attacks it. Eventually denuded axons die off and disintegrate.

Then all the effort goes into proving the above point and how to reverse this process. All funding by the millions goes to support such research. What if this concept of 'auto immune disease' is absolute nonsense. (This point has been raised by many researchers.) The lucrative industry disappears so the myth must be perpetuated to keep the coffers filling in.

I quote from a new research from the above links which is finding evidence of myelin healing - in a petri dish.

"The work [showing remyelination]......................, used neurons or nerve cells growing in a dish."

Remember in a petri dish where oxygen and nutrients are freely available. Then this philosophy is going to be applied to brains that are heavily compromised in blood flow, oxygenation, and CSF flow. It is NEVER going to work! (By the way it may also cost 50,000 Euros per patient per year!)
This scenario is repeated in study after study. What a joke!
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Re: CCSVI, cause or symptom?

Postby Cece » Thu Jan 05, 2012 3:05 pm

Then this philosophy is going to be applied to brains that are heavily compromised in blood flow, oxygenation, and CSF flow.

If CCSVI research continues to gain traction, the standard of care for people with MS will be to first treat for CCSVI if present. This may be only a few years away. Then remyelination drugs, if developed, will indeed be going to brains with healthy blood flow, oxygenation, and CSF flow.
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Re: CCSVI, cause or symptom?

Postby EJC » Thu Jan 05, 2012 3:14 pm

Cece wrote:
Then this philosophy is going to be applied to brains that are heavily compromised in blood flow, oxygenation, and CSF flow.

If CCSVI research continues to gain traction, the standard of care for people with MS will be to first treat for CCSVI if present. This may be only a few years away. Then remyelination drugs, if developed, will indeed be going to brains with healthy blood flow, oxygenation, and CSF flow.


That's still assuming CCSVI is actually a cause and not a symptom (of other external factors - not a symptom of MS) which has yet to be completely determined.

CCSVI is provided a huge leap in thinking, but we have to be careful not to put all the MS eggs into one train of thought and run the risk of being blinded to others.

I still like the unfolding story of CCSVI and I think it's a large part of the equation, what hasn't been determined is if it's beginning, middle or end.
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